Ignoring emotions, confusion about ‘hospice,’ adds to barriers

Researchers believe the findings reflect social norms about gender roles — as well as widespread messages in the media and society about “fighting” cancer. Often men see themselves as the family protector, said the study’s lead author, Fahad Saeed, M.D., a palliative care specialist and assistant professor of Medicine and Public Health Sciences at URMC. When struck with a serious illness they usually want to be cast as a “fighter” or a “warrior,” and may view palliative care as giving up, he explained.

“There is an ethos of ‘fight, fight, fight,’ and there is nothing wrong with that,” said Timothy E. Quill, M.D., an internationally recognized pioneer in palliative care. “But if all you do is fight and you ignore the emotional and spiritual aspects of what’s happening, it’s a missed opportunity to look at life in a different way.”

Scientists analyzed data from 383 individuals with advanced cancer between the ages of 22 and 90, who had been asked about their preferences for palliative care. Response options were: definitely no, possibly no, unsure, possibly yes, and definitely yes.

The analysis accounted for other factors such as aggressiveness of the cancer, age, race, and financial status, but gender was the only factor that significantly influenced preference for palliative care, according to the study, which was published in the Journal of Pain and Symptom Management.

The research is consistent with other studies showing that men also are less likely to sign do-not-resuscitate orders at the end of life, Saeed said. For this study, palliative care was defined as “comfort care, focusing on quality of life.” All of the patients had advanced cancer.

Is “fighting” compatible with palliative care?

Yes, according to Quill, because palliative care can begin at diagnosis or during any stage of a potentially life-threatening disease, and it can be delivered along with curative treatment, such as chemotherapy or immunotherapy.

In fact, evidence shows that some patients can live substantially longer when they receive palliative care in addition to other therapies.

As the founder of URMC’s palliative care program, Quill said this is a typical scenario he observes: “People sometimes wander through life. They go through the paces. They work, they take care of their families, they enjoy things, but they are not living as deeply or as fully as they’d like. When they get sick, it’s a wake-up call. I’ve heard many people say after a serious diagnosis that ‘I’ve never felt more alive.’ “

Palliative care is designed to help patients navigate emotions, as well as to relieve symptoms such as pain, shortness of breath, or other medical issues that arise from the illness or its treatment. The aim is to address the whole person, not just the cancer.

“A lot of people with a life-limiting illness want to stop and consider: Are there more important things I can do? Opening that door might result in exploring relationships, making a job change, getting back in touch with religious beliefs —whatever is meaningful to that person.

A lot of people want to learn something from the experience of their illness,” Quill said. “Palliative care can help to make the most of those situations.”

Because the focus is on improving quality of life, palliative care can also help families cope with their grief if the patient does not survive, the study noted.

Gender differences

Still, some men are hesitant to express the symptoms and emotions they are experiencing, viewing it as a sign of weakness, Saeed said. And since palliative care is all about symptom management, that becomes a problem.

Better communication around the myths and misunderstandings about palliative care might help to promote its services among men, according to the investigators, including senior author Paul Duberstein, Ph.D., professor of Medicine and Psychiatry, and director of research in the division of Palliative Care at URMC.

For example, the study noted that physicians should take into account gender differences while talking about palliative care, and be mindful of a tendency for some patients to be stoic and invulnerable.

“It’s also essential for oncology care teams to work with families,” Duberstein said. “What are men fighting for? Many of them simply want more time with their loved ones, and thus it’s important to consider the nuances of the entire family situation.”

The National Cancer Institute supported the research. Saeed is a mentored career development program scholar at URMC. Other co-authors from URMC and the Wilmot Cancer Institute are: Ronald Epstein, M.D., professor of Family Medicine, Psychiatry, Oncology, and Medicine (Palliative Care); and Sally Norton, Ph.D., R.N., F.P.C.N., F.A.A.N., a co-director of research for the Division of Palliative Care and the Independence Chair in Nursing and Palliative Care at the UR School of Nursing.